Cerebral palsy

==Prognosis==
CP is not a [[neurodegenerative disorder|progressive disorder]] (meaning the brain damage does not worsen), but the symptoms can become more severe over time. A person with the disorder may improve somewhat during childhood if he or she receives extensive care, but once bones and musculature become more established, orthopedic surgery may be required. People with CP can have varying degrees of [[cognitive impairment]] or none whatsoever. The full intellectual potential of a child born with CP is often not known until the child starts school. People with CP are more likely to have [[learning disorders]] but have normal intelligence. Intellectual level among people with CP varies from [[genius]] to [[intellectually disabled]], as it does in the general population, and experts have stated that it is important not to underestimate the capabilities of a person with CP and to give them every opportunity to learn.<ref>{{cite journal | vauthors = Jenks KM, de Moor J, van Lieshout EC, Maathuis KG, Keus I, Gorter JW | title = The effect of cerebral palsy on arithmetic accuracy is mediated by working memory, intelligence, early numeracy, and instruction time | journal = Developmental Neuropsychology | volume = 32 | issue = 3 | pages = 861–879 | year = 2007 | pmid = 17956186 | doi = 10.1080/87565640701539758 | s2cid = 17795628 | hdl = 1871/34092 | url = https://research.vu.nl/en/publications/83a36ddf-a316-4c93-8cc3-35384117e688 | hdl-access = free }}</ref>

The ability to live independently with CP varies widely, depending partly on the severity of each person's impairment and partly on the capability of each person to self-manage the logistics of life. Some individuals with CP require personal assistant services for all [[activities of daily living]]. Others only need assistance with certain activities, and still others do not require any physical assistance. But regardless of the severity of a person's physical impairment, a person's ability to live independently often depends primarily on the person's capacity to manage the physical realities of his or her life autonomously. In some cases, people with CP recruit, hire, and manage a staff of [[personal care assistant]]s (PCAs). PCAs facilitate the independence of their employers by assisting them with their daily personal needs in a way that allows them to maintain control over their lives.{{citation needed|date=January 2021}}

Puberty in young adults with cerebral palsy may be [[Precocious puberty|precocious]] or [[Delayed puberty|delayed]]. Delayed puberty is thought to be a consequence of nutritional deficiencies.<ref name="Zaffuto-Sforza2005" /> There is currently no evidence that CP affects fertility, although some of the secondary symptoms have been shown to affect sexual desire and performance.<ref>{{cite journal | vauthors = Wiegerink D, Roebroeck M, Bender J, Stam H, Cohen-Kettenis P | title = Sexuality of Young Adults with Cerebral Palsy: Experienced Limitations and Needs | journal = Sexuality and Disability | volume = 29 | issue = 2 | pages = 119–128 | date = June 2011 | pmid = 21660090 | pmc = 3093545 | doi = 10.1007/s11195-010-9180-6 }}</ref> Adults with CP were less likely to get routine reproductive health screening as of 2005. [[Gynecological examination]]s may have to be performed under anesthesia due to spasticity, and equipment is often not accessible. [[Breast self-examination]] may be difficult, so partners or carers may have to perform it. Men with CP have higher levels of [[cryptorchidism]] at the age of 21.<ref name="Zaffuto-Sforza2005" />

CP can significantly reduce a person's life expectancy, depending on the severity of their condition and the quality of care they receive.<ref name="Yar2013" /><ref>{{cite journal | vauthors = Hutton JL | title = Cerebral palsy life expectancy | journal = Clinics in Perinatology | volume = 33 | issue = 2 | pages = 545–555 | date = June 2006 | pmid = 16765736 | doi = 10.1016/j.clp.2006.03.016 | author-link = Jane Hutton }}</ref> 5–10% of children with CP die in childhood, particularly where seizures and intellectual disability also affect the child.<ref name="multidisciplinary455" /> The ability to ambulate, roll, and self-feed has been associated with increased life expectancy.<ref name="strauss_2008" /> While there is a lot of variation in how CP affects people, it has been found that "independent gross motor functional ability is a very strong determinant of life expectancy".<ref>{{cite journal | vauthors = Day SM, Reynolds RJ, Kush SJ | title = Extrapolating published survival curves to obtain evidence-based estimates of life expectancy in cerebral palsy | journal = Developmental Medicine and Child Neurology | volume = 57 | issue = 12 | pages = 1105–1118 | date = December 2015 | pmid = 26174088 | doi = 10.1111/dmcn.12849 | s2cid = 8895402 | doi-access = free }}</ref> According to the [[Australian Bureau of Statistics]], in 2014, 104 [[Australian people|Australians]] died of cerebral palsy.<ref>{{Cite web |title=Australian Bureau of Statistics 2014, 3303.0 - Causes of Death, Australia - 1. Underlying causes of death (Australia), 2014, data cube: Excel spreadsheet |url=http://abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/3303.02014?OpenDocument |work=abs.gov.au/AUSSTATS |access-date=14 August 2016 |archive-date=12 September 2016 |archive-url=https://web.archive.org/web/20160912150416/http://www.abs.gov.au/AUSSTATS/abs%40.nsf/DetailsPage/3303.02014?OpenDocument |url-status=dead }}</ref> The most common causes of death in CP are related to respiratory causes, but in middle age cardiovascular issues and [[neoplastic disorders]] become more prominent.<ref name="rehabilitation443" />

===Self-care===
For many children with CP, parents are heavily involved in self-care activities. Self-care activities, such as bathing, dressing, and grooming, can be difficult for children with CP, as self-care depends primarily on the use of the upper limbs.<ref name="vanzelst_2006" /> For those living with CP, impaired upper limb function affects almost 50% of children and is considered the main factor contributing to decreased activity and participation.<ref name="Nieuwenhuijsen_2009" /> As the hands are used for many self-care tasks, sensory and motor impairments of the hands make daily self-care more difficult.<ref name="Donkervoort2007" />{{Primary source inline|date=February 2014}}<ref name="arnould_2008" /> Motor impairments cause more problems than sensory impairments.<ref name="Donkervoort2007" /> The most common impairment is that of finger dexterity, which is the ability to manipulate small objects with the fingers.<ref name="Donkervoort2007" /> Compared to other disabilities, people with cerebral palsy generally need more help in performing daily tasks.<ref>{{Cite web |title= Therapy and equipment needs of people with cerebral palsy and like disabilities in Australia |work=Australian Institute of Health and Welfare AIHW |year=2006 |url=http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=6442455831 |archive-url=https://web.archive.org/web/20150330125338/http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=6442455831 |archive-date=30 March 2015}} Disability Series. Cat. no. DIS 49. Canberra: AIHW.</ref> Occupational therapists are healthcare professionals that help individuals with disabilities gain or regain their independence through the use of meaningful activities.<ref>{{Cite web|title=Patients & Clients: Learn About Occupational Therapy|url=https://www.aota.org/About-Occupational-Therapy/Patients-Clients.aspx|publisher=The American Occupational Therapy Association, Inc.|access-date=3 September 2019}}</ref>

===Productivity===
The effects of sensory, motor, and cognitive impairments affect self-care occupations in children with CP and productivity occupations. Productivity can include but is not limited to, school, work, household chores, or contributing to the community.<ref name="fedrizzi_2003" />

Play is included as a productive occupation as it is often the primary activity for children.<ref name="Blesedell CE 2003. p. 705-709" /> If play becomes difficult due to a disability, like CP, this can cause problems for the child.<ref name="Townsend E 2002. p. 34" /> These difficulties can affect a child's self-esteem.<ref name="Townsend E 2002. p. 34" /> In addition, the sensory and motor problems experienced by children with CP affect how the child interacts with their surroundings, including the environment and other people.<ref name="Townsend E 2002. p. 34" /> Not only do physical limitations affect a child's ability to play, the limitations perceived by the child's caregivers and playmates also affect the child's play activities.<ref name="parham_1997" /> Some children with disabilities spend more time playing by themselves.<ref name="miller_2003" /> When a disability prevents a child from playing, there may be social, emotional and psychological problems,<ref name="okimoto_2000" /> which can lead to increased dependence on others, less motivation, and poor social skills.<ref name="hestenes_2000" />

In school, students are asked to complete many tasks and activities, many of which involve handwriting. Many children with CP have the capacity to learn and write in the school environment.<ref name="Missiuna" /> However, students with CP may find it difficult to keep up with the handwriting demands of school and their writing may be difficult to read.<ref name="Missiuna" /> In addition, writing may take longer and require greater effort on the student's part.<ref name="Missiuna" /> Factors linked to handwriting include postural stability, sensory and perceptual abilities of the hand, and writing tool pressure.<ref name="Missiuna" />

Speech impairments may be seen in children with CP depending on the severity of brain damage.<ref name="howard_1996" /> Communication in a school setting is important because communicating with peers and teachers is very much a part of the "school experience" and enhances social interaction. Problems with language or motor dysfunction can lead to underestimating a student's intelligence.<ref name="rigby_1999" /> In summary, children with CP may experience difficulties in school, such as difficulty with handwriting, carrying out school activities, communicating verbally, and interacting socially.{{citation needed|date=January 2021}}

===Leisure===
Leisure activities can have several positive effects on physical health, mental health, life satisfaction, and psychological growth for people with physical disabilities like CP.<ref name="smith_2009" /> Common benefits identified are stress reduction, development of coping skills, companionship, enjoyment, relaxation and a positive effect on life satisfaction.<ref name="ReferenceC" /> In addition, for children with CP, leisure appears to enhance adjustment to living with a disability.<ref name="ReferenceC" />

Leisure can be divided into structured (formal) and unstructured (informal) activities.<ref name="cassidy_1996" /> Children and teens with CP engage in less habitual [[physical activity]] than their peers.<ref>{{cite journal | vauthors = Carlon SL, Taylor NF, Dodd KJ, Shields N | title = Differences in habitual physical activity levels of young people with cerebral palsy and their typically developing peers: a systematic review | journal = Disability and Rehabilitation | volume = 35 | issue = 8 | pages = 647–655 | date = April 2013 | pmid = 23072296 | doi = 10.3109/09638288.2012.715721 | s2cid = 14115837 }}</ref> Children with CP primarily engage in physical activity through therapies aimed at managing their CP, or through [[organized sport]] for people with disabilities.<ref>{{cite journal | vauthors = Verschuren O, Peterson MD, Balemans AC, Hurvitz EA | title = Exercise and physical activity recommendations for people with cerebral palsy | journal = Developmental Medicine and Child Neurology | volume = 58 | issue = 8 | pages = 798–808 | date = August 2016 | pmid = 26853808 | pmc = 4942358 | doi = 10.1111/dmcn.13053 }}</ref> It is difficult to sustain behavioural change in terms of increasing physical activity of children with CP.<ref>{{cite journal | vauthors = Bloemen M, Van Wely L, Mollema J, Dallmeijer A, de Groot J | title = Evidence for increasing physical activity in children with physical disabilities: a systematic review | journal = Developmental Medicine and Child Neurology | volume = 59 | issue = 10 | pages = 1004–1010 | date = October 2017 | pmid = 28374442 | doi = 10.1111/dmcn.13422 | doi-access = free }} {{open access}}</ref> Gender, manual dexterity, the child's preferences, cognitive impairment and epilepsy were found to affect children's leisure activities, with manual dexterity associated with more leisure activity.<ref>{{cite journal | vauthors = Bult MK, Verschuren O, Jongmans MJ, Lindeman E, Ketelaar M | title = What influences participation in leisure activities of children and youth with physical disabilities? A systematic review | journal = Research in Developmental Disabilities | volume = 32 | issue = 5 | pages = 1521–1529 | date = September 2011 | pmid = 21388783 | doi = 10.1016/j.ridd.2011.01.045 }}</ref> Although leisure is important for children with CP, they may have difficulties carrying out leisure activities due to social and physical barriers.{{citation needed|date=January 2021}}

Children with cerebral palsy may face challenges when it comes to participating in sports. This comes with being discouraged from physical activity because of these perceived limitations imposed by their medical condition.<ref>{{cite journal | vauthors = Coleman N, Nemeth BA, LeBlanc CM | title = Increasing Wellness Through Physical Activity in Children With Chronic Disease and Disability | journal = Current Sports Medicine Reports | volume = 17 | issue = 12 | pages = 425–432 | date = December 2018 | pmid = 30531459 | doi = 10.1249/JSR.0000000000000548 | s2cid = 54473147 | doi-access = free }}</ref>

===Participation and barriers===
Participation is involvement in life situations and everyday activities.<ref name="King" /> Participation includes self-care, productivity, and leisure. In fact, communication, mobility, education, home life, leisure, and social relationships require participation, and indicate the extent to which children function in their environment.<ref name="King" /> Barriers can exist on three levels: micro, meso, and macro.<ref name="Aitchison" /> First, the barriers at the micro level involve the person.<ref name="Aitchison" /> Barriers at the micro level include the child's physical limitations (motor, sensory and cognitive impairments) or their subjective feelings regarding their ability to participate.<ref name="imms_2008" /> For example, the child may not participate in group activities due to lack of confidence. Second, barriers at the meso level include the family and community.<ref name="Aitchison" /> These may include negative attitudes of people toward disability or lack of support within the family or in the community.<ref name="Specht" /> 

One of the main reasons for this limited support appears to be the result of a lack of awareness and knowledge regarding the child's ability to engage in activities despite his or her disability.<ref name="Specht" /> Third, barriers at the macro level incorporate the systems and policies that are not in place or hinder children with CP. These may be environmental barriers to participation such as architectural barriers, lack of relevant assistive technology, and transportation difficulties due to limited wheelchair access or public transit that can accommodate children with CP.<ref name="Specht" /> For example, a building without an elevator can prevent the child from accessing higher floors.{{citation needed|date=August 2021}}

A 2013 review stated that outcomes for adults with cerebral palsy without intellectual disability in the 2000s were that "60–80% completed high school, 14–25% completed college, up to 61% were living independently in the community, 25–55% were competitively employed, and 14–28% were involved in long term relationships with partners or had established families".<ref>{{cite journal | vauthors = Frisch D, Msall ME | title = Health, functioning, and participation of adolescents and adults with cerebral palsy: a review of outcomes research | journal = Developmental Disabilities Research Reviews | volume = 18 | issue = 1 | pages = 84–94 | date = August 2013 | pmid = 23949832 | doi = 10.1002/ddrr.1131 }}</ref> Adults with cerebral palsy may not seek physical therapy due to transport issues, financial restrictions and practitioners not feeling like they know enough about cerebral palsy to take people with CP on as clients.<ref name="Lawrence2016" />

===Aging===
Children with CP may not successfully transition into using adult services because they are not referred to one upon turning 18, and may decrease their use of services.<ref name="rehabilitation443" /> Quality of life outcomes tend to decline for adults with cerebral palsy.<ref>{{cite journal | vauthors = Alves-Nogueira AC, Silva N, McConachie H, Carona C | title = A systematic review on quality of life assessment in adults with cerebral palsy: Challenging issues and a call for research | journal = Research in Developmental Disabilities | volume = 96 | pages = 103514 | date = January 2020 | pmid = 31706133 | doi = 10.1016/j.ridd.2019.103514 | s2cid = 207936522 }}</ref>  Because children with cerebral palsy are often told that it is a non-progressive disease, they may be unprepared for the greater effects of the [[aging]] process as they head into their 30s.<ref>{{cite report | veditors = Turk MA, Overeynder JC, Janicki MP | date= 1995 | url = http://www.rrtcadd.org/resources/Resources/Topics-of-Interest/CP/future.pdf | title = Uncertain Future – Aging and Cerebral Palsy: Clinical Concerns | location = Albany | publisher = New York State Developmental Disabilities Planning Council | archive-url = https://web.archive.org/web/20160803114950/http://www.rrtcadd.org/resources/Resources/Topics-of-Interest/CP/future.pdf | archive-date=3 August 2016}}</ref> Young adults with cerebral palsy experience problems with aging that non-disabled adults experience "much later in life".<ref name="Kerkovich, D 2009, pp. 41-53" />{{rp|42}} 25% or more adults with cerebral palsy who can walk experience increasing difficulties walking with age.<ref>{{cite journal | vauthors = Morgan P, McGinley J | title = Gait function and decline in adults with cerebral palsy: a systematic review | journal = Disability and Rehabilitation | volume = 36 | issue = 1 | pages = 1–9 | date = 17 April 2013 | pmid = 23594053 | doi = 10.3109/09638288.2013.775359 | s2cid = 9709075 }}</ref> Hand function does not seem to have similar declines.<ref name="The epidemiology of cerebral palsy" />  Chronic disease risk, such as [[obesity]], is also higher among adults with cerebral palsy than the general population.<ref>{{cite journal | vauthors = Peterson MD, Gordon PM, Hurvitz EA | title = Chronic disease risk among adults with cerebral palsy: the role of premature sarcopoenia, obesity and sedentary behaviour | journal = Obesity Reviews | volume = 14 | issue = 2 | pages = 171–182 | date = February 2013 | pmid = 23094988 | doi = 10.1111/j.1467-789X.2012.01052.x | hdl-access = free | s2cid = 26998110 | hdl = 2027.42/96337 }}</ref> Common problems include increased pain, reduced flexibility, increased spasms and contractures, [[post-impairment syndrome]]<ref>{{cite web|title=CP and ageing|url=http://www.scope.org.uk/support/disabled-people/old-age/cp|archive-url=https://web.archive.org/web/20160506052736/http://www.scope.org.uk/Support/Parents-and-Carers/Landing/Cerebral-palsy/Ageing|archive-date=6 May 2016 |website=[[Scope (charity)|Scope]]|access-date=24 December 2016}}</ref> and increasing problems with balance.<ref name="hirsch_2013" /> Increased [[fatigue (medical)|fatigue]] is also a problem.<ref name="Developmental Medicine 2011" /> When adulthood and cerebral palsy is discussed, {{as of|2011|lc=y}}, it is not discussed in terms of the different stages of adulthood.<ref name="Developmental Medicine 2011" /> About half of people with CP report some loss of function as of their 40s.<ref>{{cite journal |last1=Kumar |first1=Devina S. |last2=Perez |first2=Gabriel |last3=Friel |first3=Kathleen M. |title=Adults with Cerebral Palsy: Navigating the Complexities of Aging |journal=[[Brain Sciences]] |date=September 2023 |volume=13 |issue=9 |pages=1296 |doi=10.3390/brainsci13091296 |pmid=37759897 |pmc=10526900 |language=en |issn=2076-3425 |doi-access=free }}</ref>

Like they did in childhood, adults with cerebral palsy experience psychosocial issues related to their CP, chiefly the need for social support, self-acceptance, and acceptance by others. Workplace accommodations may be needed to enhance continued employment for adults with CP as they age. Rehabilitation or social programs that include [[salutogenesis]] may improve the coping potential of adults with CP as they age.<ref>{{cite journal | vauthors = Horsman M, Suto M, Dudgeon B, Harris SR | title = Ageing with cerebral palsy: psychosocial issues | journal = Age and Ageing | volume = 39 | issue = 3 | pages = 294–299 | date = May 2010 | pmid = 20178997 | doi = 10.1093/ageing/afq018 | doi-access = free }}</ref>